Other conditions

[ruuthmo]

I have had A/F for 12 years, but now diagnosed with Pulmonary Fibrosis as well. Is there anyone on this site with both conditions please? I am currently waiting to see a Consultant, but it's always very helpful to hear how other people have managed to cope with both.

[john-boy-92]

By pulmonary fibrosis, do you mean scarring of the heart, or scarring of the lungs that can also be referred to as cryptogenic organising pnuemonia (COP) or pulmonary toxicity? If it's the lungs, yes I've had it secondary to dronedarone and amiodarone. I was given those drugs to treat AF, never having been offered an ablation, anticoagulation, or drug for AF. After being discharged from hospital twice without treatment, I was admitted at the third time with SpO2 of 76% (hypoxic) and that night I was close enough to death that they wanted to telephone my wife at 1:15 am. The consultants who treated me wrote a paper, published by the Royal College of Physcians of Edinburgh and it became case of the quarter. The prognosis then was death, or life in a wheelchair on oxygen. I was the latter prognosis but overcame it. Then I had a stroke. During COVID I should have been classified as clinically exceptionally vulnerable in March, but due to NHS administrative chaos, that didn't happen until November. I recovered using my own Concept2 rowing machine. However, each of the COVID injections has caused a lot of mucus and lack of energy (but were necessary to protect me).

I'm a lived experience participant in various stroke and AF studies including AFFIRMO. I'm up against a hard place trying to get primary care to detect atrial fibrillation, and in email conversation with Trudie Lobban, we share the same frustration.

I'm happy to discuss via this forrum.

[etheral in reply to john-boy-92]

Sorry for your travails and wishing you the best. Sounds like this started with the use of Amioderone. This is a dangerous drug that should be reserved for unresponsive cases and certainly not prescribed initially.. In the states Pulmonary Function studies are done before starting it and then regularly. etheral

[ruuthmo in reply to etheral]

This does seem to make sense, I was on it for a while before an ablation 12 years ago, also have had a number of infections since then. Many thanks.

[ruuthmo in reply to john-boy-92]

That is so helpful to hear, also your response - I am a firm believer in the benefits of exercise and am working every day to try to slow down progression of the scarring in my lungs. Still waiting to see a Consultant to discover how far the condition has advanced, but I was treated with Amiodorone prior to an Ablation, the first one having failed, and the second was successful. Horrified to think it might have been the cause of this lung problem at this stage of life., thank you so much for replying and explaining your situation. All very good wishes,

[Ppiman]

My daughter-in-law's 40-year-old brother has a small amount of PF at the base of his left lung caused by his covid infection. He seems okay with it, though.

Steve

[ruuthmo]

This is interesting, because I believe infections have played a part in this diagnosis. Will know more later in the month when I see a Consultant. Thank you.